Board of Directors
- Katheryn Elibri Frame, President
- Melissa Ralston, Secretary
- Karen Utley, Treasurer
- Kelly Barnes
- Amanda Jaksha
- Megan Strok
- Rick Upp
- Miriam Blase
Katheryn Elibri-Frame, DO, President
There are moments in life that take your breath away. For me it was my daughter’s first seizure when she was 8 weeks old. And there are moments that change the course of your life in a single word, CDKL5, and a single sentence, “It’s very, very rare!” When I heard these words, it was October 2008 and my precious daughter, Kiera, was almost three years old. I was stunned and devastated. It was an uncomfortable place to be, because as a physician I was used to finding solutions, and looking to science and research for clues and direction. There was virtually no research being done on CDKL5, no understanding of what CDKL5 was, and no unifying organization to encourage and fundraise for research, for raising awareness or for helping families. After meeting other CDKL5 parents online, I knew that we were capable of rallying together and making a difference for our children. Within a few short months, a small group of us came together to move mountains, and IFCR was born. It is my honor and privilege to serve as President of IFCR, and to help grow this international organization into a force for good. I am now focused and determined that CDKL5 will not define Kiera’s life, and I have pledged my life to making hers better. When I look into Kiera’s eyes every day, and hold her fragile and delicate hands, I am awed and humbled that she believes in me. This road has not been easy, and there may be difficult days ahead, but we have come a long way in a short time. I have confidence and plenty of hope, that what lies ahead is better and brighter than where we started.
I graduated medical school from Michigan State University, and I am a diplomat of the American Board Emergency Medicine, and board prepared in Internal Medicine. I have experience with both basic science and clinical research. I represent the IFCR and CDKL5 in the Rare Epilepsy Network (REN), a coalition of national epilepsy organizations and institutions, and serves on the REN steering, database elements and recruitment and retention committees. I am also involved in the Vision 2020 initiative for epilepsy awareness and in committee work with the Institute of Medicine. I am focused on building a coalition of researchers, collaborators and advocates worldwide and raising awareness of CDKL5, and I am dedicated to building and growing the IFCR into the leading international resource for funding CDKL5 research programs for better understanding of CDKL5, its treatments and cure.
Melissa Ralston, Secretary
My husband, Ron, and I live in Ohio and have two beautiful daughters: Ava is 13 years old and Vivienne is 10 years old and is affected by CDKL5.
We were just settling into our new life with two kids, when Vivi had her first seizure at 4 weeks old. Everything changed in an instant. Our “normal” life was replaced with doctors’ visits, hospital stays, and tests. We received the CDKL5 diagnosis on November 11, 2008. Now that we knew what we were fighting, it was time for us to get busy trying to find a cure for it!
I was so blessed to meet other families that were walking my same path through the online support group. We brought an array of backgrounds together and formed the IFCR in September 2009. I graduated from Ashland University with a BA in Business Administration and a concentration in Marketing and English literature. I was fortunate to work at two Fortune 500 companies – Rubbermaid (as a distribution specialist) and OfficeMax (as an assistant buyer). Working at these companies enabled me to obtain my MBA in 2000. Soon after that, I started working at a commercial and retail juice manufacturer as their Marketing Manager. When Vivienne was six months old, I left to stay at home with her and her sister full-time.
Our family has also been very involved in fundraising for the IFCR. We’ve recently held our 8th Annual Vivi’s Drive for the Cure Golf Outing/Fundraiser. I know a cure is within reach! It is my honor to work for the IFCR and help bring about a better life for all of those who are affected by CDKL5.
Karen Utley, Treasurer
I am mom to three beautiful girls; Kindsey (27), Kaylee (21), and Samantha (10). Samantha had her first seizure at 10 weeks of age, and she was diagnosed at 20 months. As soon as I had a diagnosis, I knew that I had to be proactive. As a founding board member and treasurer for IFCR, volunteering has given me a sense of control in an out of control situation. At a very young age, I began working for my father’s business, and through this job I learned accounting skills as well as business communication techniques. I have served in leadership positions in many facets, including president of the PTO and president of a large homeschool sports and education co-op group. I love serving others with my abilities and life experiences. Being a support system for other mothers and families of those affected by CDKL5 has become my passion. Firmly believing that a cure is possible, I have begun to pursue a degree in molecular biology with a genetic emphasis. As I gain knowledge in this area of science, I hope to use it to improve the lives of those diagnosed with a CDKL5 Disorder.
My name is Kelly Barnes. I live in Erie, Pennsylvania with my husband, Brian and three children. Leah is 9 years old and diagnosed with CDKL5, and Ally is 5 and Lauren is 1. I currently teach 2nd grade in the City of Erie where I have taught for the last 12 years. I have a Bachelor’s Degree in Elementary Education and a Master’s Degree in Education. When our daughter Leah was two months old she had her first seizure. Shortly after that she was diagnosed with Infantile Spasms followed by a diagnosis of CDKL5 when she was just over a year. This diagnosis shook our world. We struggled with the life we thought would have and now with our reality of what life was going to be. I decided to become a board member of the International Foundation for CDKL5 Research because I wanted to help my daughter and all the other children affected by CDKL5. I have been a board member for the last four years. I know that what we are doing is changing the face of CDKL5. As a foundation, we are proud of the work we have done and excited about what the future holds.
My oldest daughter, Ava was seven months old when noticeable seizures came roaring into her life. We spent many tumultuous years dangling from a string while managing refractory epilepsy and chasing evidence that might explain her illusive neurological condition. After six years of guesstimating, an answer came in the spring of 2012 that named the culprit in Ava’s complex medical puzzle. Her neuro-metabolic team had finally identified the small deletion in her CDKL5 gene. It was liberating to have a diagnosis and delightful to find the International Foundation for CDKL5 Research in existence. It is an honor to join this amazing Board of Directors and take part in advancing their swift paced momentum towards treatments and a cure. I earned my Bachelor of Science in Business Administration with an Accounting concentration from Colorado State University. My family calls Colorado home and I manage my own accounting business with a focus on managerial accounting. I am also a certified nurse aide; this allows me to provide direct care to Ava as an employee of a large home health care agency. You can find me at the Children’s Hospital Colorado CDKL5 Center of Excellence representing the IFCR, a duty I adore. In unity, we will realize a brighter tomorrow that includes treatment options, a road map for care takers, and ultimately a cure. I embrace the spirit of perseverance; together we can conquer the CDKL5 disorder.
I was born and raised in Cleveland, Ohio, where my husband, John, and I live with our three wonderful kids: Lily, Jack and Ryan.
I graduated from Slippery Rock University with a degree in Spanish and International Business in 2000. I eventually went back to grad school for my master’s degree and graduated from John Carroll University with my MBA in 2008.
I have worked at Cleveland Clinic since 2000 in many different capacities. In the years following Ryan’s diagnosis with CDKL5, it became evident that my past experiences –professionally, academically and personally – had been preparing me for my most important role: mom and CDKL5 advocate.
Currently, I work at the Cleveland Clinic Children’s Hospital for Rehabilitation as Assistant Administrator. I am fortunate to be a part of such a wonderful healthcare organization that allows me to contribute to improving the lives of children, especially those with special needs. I am also very involved with our children’s activities, as a member of the PTA, a soccer mom, a Girl Scout troop leader and as a member of the Board of Directors for the IFCR. Our family has also been very involved in fundraising for the IFCR by holding the Annual Strides for Starfish 5K and 1 mile fun run.
I am passionate about “being the change you wish to see in the world,” and I am humbled and inspired to be part of the IFCR Board. It is an honor to work with this group of dedicated individuals towards research and ultimately a cure to CDKL5.
Cynthia and I are parents to Emily (26), Amanda (24), Ethan (19), Olivia (14), and Isaac (13). That’s right, five kids, which makes us the 7 Upps. We live in Spokane, WA. I have a Bachelor’s degree in French from Reed College (Portland, Oregon) and a Master’s in French from the University of Washington (Seattle). Somehow, I ended up in the high tech industry, where I have been working for 25 years. Between formal education, work, and volunteering for a variety of organizations, I’ve developed skills in communication, negotiations, partnering, organization, and problem solving (and, of course, technical skills). I look forward to using all of these to help the IFCR defeat the monster that first raised its head when our Olivia was only two months old.
Although Olivia had her first spasms at two months, it took another 10 years before a specialist in Seattle was able to determine that she had CDKL5. Learning that has changed nothing and everything. Nothing, because it offered no new treatment or cure. But it changed everything because now our enemy had a name, and we had a new focus. Our mission from that day forward has been to defeat CDKL5. We were so excited to find the IFCR and the support group on Facebook. Cynthia and I have been the West Coast Family Support Regional Representatives for the IFCR for a couple of years now, and I was honored to be asked to join the Board of Directors of the IFCR in 2016. I am so encouraged to be able to work together with such an amazing group of parents and incredible leaders to take on this terrible condition. I know together we will prevail! Our angels are depending on it.
I am honored to serve on the IFCR Board and looking forward to furthering the work already done towards finding a cure for our children and supporting families on their CDKL5 journey. Our son, Landon, was diagnosed with infantile spasms and CDKL5 in 2010. Since then, I have been actively seeking out ways to connect with other families who have children with disabilities through the Facebook support group. I have also worked on the sponsorship committee for the IFCR Family Conferences in 2014 and 2016. I am passionate about finding care teams, resources and education to help parents so CDKL5 children can have the best quality of life possible. With Landon in tow, my husband, Bryan, and I are aspiring runners locally in our hometown of Atlanta, GA. I have spent the last 13 years in corporate financial services with JP Morgan, and I hold an M.A. Industrial Psychology from New York University.